Walk a Mile in... Rosemary's Shoes
Rosemary cares for her partner David who has recently celebrated his 80th birthday. David was given an official diagnosis of Alzheimer's 1 year ago and Rosemary has cared for him since. David has forgotten how to do daily tasks including using a knife and fork and thinks that the cat is a dog. Listen to Rosemary's story of how she’s learnt to deal with the difficulties bought on by Alzheimer's by taking things day-by-day.
Listen to Rosemary's story to find out what it's like to walk a mile in her shoes.
"Hello my name is Rosemary Jeffrey, I have been caring for my partner David Goodall, who has Alzheimer’s, probably for the last two years.
"He was diagnosed last year with the disease, but I’m sure he had it for the year before because he kept loosing things and forgetting where he was but he didn’t actually get the diagnosis until a year ago. Since then he has been in hospital about four times with various things, luckily he likes it in hospital, so that gives me a break. I know I still have to go and visit but it’s still a break because he doesn’t sleep very well at night and I have very disturbed nights, I’ve not slept all night for about two years, except when he was in hospital.
"The first time he was in hospital I couldn’t quite manage him on my own at home, so the social worker got me in touch with the caring company and I have carers come in now, they come in in the morning for half an hour to get him ready for day wear, and they come in at night to help him get ready for bed. Apart from that I wanted some time to myself so I’ve had a sitting service with the same company; three hours on a Monday, three hours on a Wednesday and three hours for shopping on a Friday. So if he is feeling well the carer is insured to take him in the car and we can all go, but if he doesn’t feel too good I go on my own. Other time I get on my own is if he is asleep, he does sleep a lot, I can go into the garden and doing a bit of pottering around, I can ring some friends, have a chat or read my book and some puzzles which I like to do.
"Also David decided he wants to go to a day centre, so he goes to Blackwell on a Friday morning, they collect him on the bus and take him there, he has his lunch there and they bring him back about half past 2 so that’s … that’s … he goes to that but sometimes he’s not well enough to go, so I have to cancel it so he can’t go.
"When he was first diagnosed he didn’t want any of my friends or his friends, or anyone in the close to know about the illness, he wanted to keep it to himself. I found that quite difficult and in the end I had to say ‘I have to tell somebody’ and after that everybody knows now, and the neighbours have been kind, I can’t fault this area for neighbours. I have also got in touch with some of his friends that have visited him, and I’ve got in touch with my friends, which I had been ignoring, and they come up and visit him and if a carers there we will go out and have a coffee or something and have a chat and it’s a break for me. Even though he can be nasty sometimes they still keep coming and the neighbours are still ok with everything, all I can do is apologise, but it can’t be helped, it’s just the illness.
"This is why we have problems with the sleeping. I don’t sleep very much because not only has he got Alzheimer’s, he’s got prostate trouble as well so he goes to the toilet quite regularly. I have got a commode in the back bedroom but he can’t do it on his own, I have to get up and do it for him, so that disturbs my night. If I get at least four hours, I am able to drive but the doctors told me not to drive with any less than that, because its sleep deprivation and not supposed to do it, so I do go by what the doctor says.
"If David has to go to the doctor and he won’t come out, the doctor, the carer will take him in her car if she’s available, if not we get a taxi. I struggle getting him in my car, it’s only a small car and he’s got a walker with wheels on and a seat on and it’s too big to go in my car, but it will go in the carers as she had got a rather large car. I don’t really want to change my car as I’m the only one that drives it at the moment so I want to keep that car, but it has proved a bit difficult at times.
"I will try and get him to come a walk with it, just around the local area but he doesn’t always want to go and he does struggle sometimes with it.
"The worst parts of this disease is he forgets who I am, he calls me mum, he calls me grandma, he doesn’t know my name. If I was to ask him my name now he wouldn’t be able to tell me my name. He doesn’t recognise his daughter or the grandchildren. She got quite upset about it but I said ‘it doesn’t matter, its part of the illness’. I’m here 24 hours a day and he still can’t know who I am, and so I said ‘don’t worry’. They visit once a week, every week and they come, I said ‘if you don’t come he will never know who you are’. When they’ve been here a bit he will start saying things from the past that he can remember, but sometimes he’s just asleep all the time, it just depends.
"The other things that are not very nice with this illness, apart from not remembering you, is he’s forgotten how to use like a knife and fork, food goes all over the place, all over the table, all over his clothes, all over the chair, anywhere. And he’s also forgotten how to use the toilet, which is another downside.
"The good bits about the illness is I’ve learnt to be a bit more, well I’ve learnt to be caring, and a bit more patient, not always, but I try to be a bit more patient because it’s the illness talking, not David. It’s not the David I knew, it’s altered the relationship all together, but it has made me a better person for doing this sort of thing. I mean I get lots of compliments from people, which is quite appreciated, and they all say they couldn’t do it, but I think if the boot was on the other foot and it was their husband that they would do it. It’s just they don’t know how to do it at the moment, but I didn’t know when I first started out, I made lots of mistakes, but I have talked to people, talked to the social worker and everything sort of falls in place and you get into a routine. He likes routine, he likes a breakfast, dinner, tea, supper, bed, everything has got to be routine, if it goes out of routine he can get quite nasty, and he’s has had his nasty moments but it’s not David, it’s the illness and you have to try and remember that, even though it is quite difficult at times.
"I would like to take David on holiday. Because we went on holiday last year, we went up to see his brother in Newcastle. We went on the train because I thought it was too far for me to drive, but we had a terrible time. His brother was very good but couldn’t quite help enough. He fell down about four times while we were there, he also got stuck in the bath, we couldn’t get him out even though they said it was a disabled bath and handles and everything. I had to fetch the porter, or anyone who was in the kitchen, to come and help get him out of the bath for me. He didn’t eat his meals there because he wasn’t sure where he was, and it was lovely food it was just a waste really, and he wouldn’t … when we came back on the train, he wouldn’t get off the train and the train had to be held up quite a while so we could get off. We got the carer to pick us up afterwards and she said ‘what was the problem?’ I said I just couldn’t get David off the train, he wouldn’t get off at the stop. I don’t know why, perhaps he was panicking, perhaps he was frightened but I told him we were coming home but it would have been nice to have some with me probably, to help out with all this situation, but I didn’t have anybody and I thought if we do have a holiday again, I would prefer to take somebody with me, whether it be a friend or a carer or a relative or somebody."
David speaks - "Take me with you"
"It would be quite useful and not so stressful for me, it was probably the worst holiday we’ve ever had so I don’t know what’s the answer to that.
"And another thing, I was quite wary about it to start off with, but we’ve had a kitten, and its now 10 months old and, even though David thinks it’s a dog, he is still very good with it. I was a bit worried how he would handle it, but he says he loves her and everything and he gets on alright with her. Its livened us up a little bit because she does such silly things, and also with him sleeping a lot it’s a bit of company for me, so I can have the cat there to talk to or have a look what she is doing, Its made quite a bit of difference so that’s another positive thing to do."